Living with Asperger's Syndrome. Yes, it can be done. Diagnosis helps.
|Explaining My Son
By Marilyn Mackenzie
It’s a shame that I feel the need to explain or interpret my son to the world. But I do. To the casual observer, he appears to be a normal nineteen-year-old, not quite sure whether he has reached adulthood or is still in the midst of being a kid. He feels young, and has to remind himself that he’s not that fourteen-year-old anymore.
Derek began the world “topping the charts.” His weight was 8 lbs. 12 ounces. At only three days of age, he rolled over and back for the first time. He held his head up almost from birth, because he was so strong. His only nourishment for the first six months was by nursing, and he thrived and gained lots of weight. His height and weight measurements were always in the top 80-90% ranking when we visited the pediatrician’s office. So were his skills – holding up his head, rolling over, crawling, standing and walking. He was a big baby, and because of that his doctor said he might not walk real early. The doctor was wrong. Derek walked at just 9 months.
Change was something that bothered Derek from his beginning, but it bothered him more than it bothered other babies. I never knew why.
As a toddler, if I informed him that we’d be traveling to the bank, the grocery, the post office and Grandma’s house, he expected that the trip would go just as I told him. If I deviated from what I told him, if we went to the grocery store first, then the post office and the bank, he would cry. I didn’t know, at first, why that was so. But I soon learned. As a pre-schooler, these kinds of changes were considered by him to be lies.
When Derek was just eleven months of age, I enrolled him in a day care center. The director asked me to write down all the words and phrases he knew and understood, as well as all the words he could use, if any. She provided me with a few lines to do so. When I smiled and asked if she really wanted a complete list of words he knew or used, she said that she did. I asked for a sheet of paper so I could make a complete list. When I gave her that list, I’m sure she thought I was crazy. But a few days later, she called me into her office to tell me I was right about all the words Derek knew and used. She also shared excitedly that he was using three word sentences. I knew that.
Derek never liked having wet or soiled diapers. When he started walking, he also learned to take off his diaper and bring a fresh one. He was potty trained entirely by the age of two. He even got up in the middle of the night and used the bathroom by himself and went back to bed. After he started using “big boy pants” he never had an accident.
Derek’s IQ was tested by a psychologist at the age of two. She was in our home selling educational toys and was fascinated by Derek. She had two gifted children of her own, and she was a psychologist the public school system used, so I trusted that she knew what I already had surmised – that my son was gifted. Derek’s IQ tested at 164 at that age.
At two, Derek could read the alphabet – upside down and right side up. He also started “reading” company logos. I thought he was just recognizing and remembering them. But when he started really reading at three, I realized he’d been doing more than recognizing at two. I was certainly convinced of his ability at three when I asked what the sign in the window of a convenience store said. It read “help wanted, evening shift.” He read that without any effort.
It was also at this age that I noticed how literally my son took everything. When he performed well as a “munchkin” in the Wizard of Oz, and a member of the audience sought him out to tell him what a show stopper he was, Derek was devastated. He was obviously bright and understood things that most children that age never could. But no amount of talking could make him understood that being a showstopper was not necessarily a bad thing. He performed for just one more production – Snow White – then wanted to stop. His heart just wasn’t in it anymore. He was afraid he was going to do something wrong again and stop the show.
That literal thinking never changed, even to this day. At about six, he informed his teacher that this dad always drank while he drove. The teacher was concerned and asked me about that. When I talked with Derek about what he had shared with the teacher, he was adamant about his belief that his dad drank and drove all the time. Since his dad hardly ever drank alcohol at all, I couldn’t understand what he meant. Then it dawned on me. His dad always had a cup of iced tea in the car to drink. Yes, he did drink iced tea and drive. Derek didn’t understand that the commercials on TV warning about the dangers of drinking and driving were about alcohol. He said, “But mom they don’t say that. They say don’t drink and drive.” No amount of explaining could convince him that I was right. “Why would the commercials lie?” he asked. See? He couldn’t see the difference, even though he was so bright.
At nineteen, he still has trouble distinguishing these things. He takes everything literally and he thinks most of the world lies all the time because of that. If someone tells my son that they’ll do something in a day or two, when whatever he expected happens on day three, he’s disappointed in the individual because it didn’t happen in “a day or two.”
Derek attended private schools from kindergarten through 3rd grade. His first school experience was where kindergarten through 2nd grade was located in one room. His teacher was not convinced, at first, that he was really all that bright. She assumed that I was just an eager mom, a bit older than the rest of the parents of her students, but just a typical eager mom. Soon, she placed my kindergarten child with the second graders to read.
It was at that time that Derek started having nightmares each and every night. And he would never share what they were about. Finally, after almost two years and much cajoling, he shared his problem with me.
The school was a Christian one of a denomination different than our own. They had promised me that wouldn’t be a problem, as long as Derek could prove that he attended Sunday School and worship services each week. But what I didn’t know was that Derek told them he thought he hadn’t been baptized as a baby. That combined with the fact that we were of the “wrong” denomination, made the teacher and students pray for my son each week.
They told him that he and his family and church members would be destined to hell because of our church choice. Derek believed them. He also started having “voices” in his head – the “devil” – telling him how bad we all were that we weren’t of the right denomination. For two years he suffered this alone until he finally shared. I pulled him out of that school right away.
The following year, he attended another private school. That was a great experience, but the school closed after the year was through. Next he entered a Montessori school. I thought that being able to progress at his own pace would be good for my bright son. But this particular school didn’t really follow the normal Montessori plans, and Derek got into trouble for bothering the other kids when he completed his work. He also had taken on a role of telling the other kids when they did something wrong. (And with his literal thinking, much could appear to be wrong to him.)
It was at that time that I realized that my son couldn’t read the non-verbal cues of others around him. Even though his teacher might look at him sternly, he thought she was approving of his behavior. He really didn’t understand what all the fuss was about. When he finished his work, he thought he was being kind to offer his help to others around him. When he corrected them for their wrongs, he thought he was doing the right thing. And there was no convincing him that his teacher was doing anything but smiling brightly upon him. He never saw the stern looks she gave, trying not to criticize him because she knew that he might cry and withdraw into himself if she corrected him verbally.
The year my son attended this Montessori school, the director changed from being a Roman Catholic to being a Buddhist. She introduced yoga to the students and meditation, and she started trying to sell magnets and crystals (some New Age things she also started embracing) to parents. And when Derek’s Christian teacher decided not to return the next year, we decided to try home schooling.
Home schooling was a great choice, at least scholastically. Derek completed 1-½ years of school during his first year of home schooling, and could have done even more. He loved being able to progress at this own pace. Instead of letting him just whiz through school, I encouraged him to read extra books in addition to his regular subjects. That first year, he read over 60 books and won awards for the number of workbooks he completed, the number of books he read, and the fantastic book reports he wrote, from the umbrella school under which we operated.
Socialization, something that everyone worries about with home schoolers, wasn’t a real problem for us. Although he didn’t enjoy the group that met each week to do physical education or take field trips together, he did enjoy his Spanish class. A group of home school parents hired a Spanish teacher to teach our children. He also attended a computer school to learn about computers. And he was a member of the Florida Boy Choir, which boasted 80 choir members. They met three times a week for a few hours, went to camp for a week twice a year, and performed with boy choirs from all over the world in concert at the Tampa Bay Performing Arts Center. Additionally, he was active in our church.
Because of the first private school experience and the nightmares that started because Derek wasn’t baptized as a baby, he asked our pastor to baptize him at the age of 5. The pastor worked with him for a few weeks to make sure Derek understood what being baptized meant. After being baptized, Derek wrote a song and sang it in front of the entire congregation with his dad accompanying him on the piano.
He soon realized that just being baptized didn’t make him a full member of our church. At 8, he asked the pastor if he could attend confirmation classes. He did, and at the age of 9, he joined the church. Soon after that, he showed up at the pastor’s door. He had taken the vow he made quite seriously (and literally) which said he would give his time, his talent and his tithe to the church. Derek wanted to know what job he could hold in the church to serve and give his talents. The pastor asked him to create and publish a kids’ newsletter, which he did proudly each month for two years.
When we moved to Central Florida from the Gulf Coast and joined another church, Derek was quite perturbed at the adults in that church. They didn’t understand his need to have a job in the church. To them, kids his age just attended Sunday school and worship services and youth groups. Perhaps they might do service projects with the youth group. But to these church members, kids were just meant to be kids – seen and not heard. He tried to explain that he was a full member, having transferred his membership, and having been through confirmation classes. And he wanted to fulfill his vow of membership by sharing his talents. But they didn’t listen or understand his literal thinking. And that was the beginning of his disdain for organized religion.
Moving to Central Florida was a change that was hard for Derek to take, even though he was home schooled and didn’t have to enter a new public or private school. Church had always been a part of his life, and changing churches (and leaving church friends) was hard. He also thought the home school group in that area contained a bunch of “dorks.”
Still I didn’t know how hard on him this had been until we were long gone from there. He didn’t share much of what was going on his head back then. He thought he was so different than everyone else, even his parents, that he didn’t want to be considered crazy.
My brother came to live with us for a while. Brother Bill is an alcoholic, and we were going to try to help him quit drinking while he helped us keep the house and yard maintained. What happened instead was that my brother introduced my son to drinking alcohol and smoking marijuana. He was already smoking cigarettes. All of these were facts that didn’t come to light until a few years later. When I became aware that my brother was drinking, I sent him away again. But I really didn’t know that he had introduced my son to drugs and alcohol until a few years later.
Not long after I sent my brother packing, Derek’s dad became abusive and we left and moved to Texas to be near relatives. I knew this would be a big change that would be hard to handle for my son. I had been placing foreign exchange students and had one student whose placement was not a good one. Her mother and dad asked if I might take her to Texas with me for the remainder of the school year. They were in the midst of a divorce and wanted Sabrina to be away while they fought.
Sabrina and Derek got along famously. She missed her little brother and considered Derek her adopted little brother. Derek had always wished he’d had an older brother or sister to help him along life’s road.
The two of them made plans together and were thrilled that they’d be sharing the next 7 months together in Texas. (Actually, Sabrina had already asked her parents if she might stay for the next school years as well, a fact I didn’t learn until later.) Sabrina and Derek were all geared up for a grand adventure. Derek was going to enter public school for the first time in his life. Although that was something he knew would create some discomfort for him, having Sabrina in the same school as his adopted big sister gave him confidence that he could survive there. We were all surprised when we arrived in Texas to find a situation much different than we expected.
First, my family had decided without consulting me that my brother would live with me. That was not my choice. I had experienced having him live with me before and didn’t want that experience again. I had done my time. (I still didn’t know that my brother had introduced my son to drugs and alcohol, or I would have really been upset.)
My brother screamed and shouted at me that I shouldn’t have brought “that girl” with me. My brother-in-law stood in front of me and shouted at me with daggers for eyes, that he was already supporting my entire family and didn’t want to support a foreign exchange student. (She came from a rich family and had $800 a month for allowance. That was not going to be a problem.) And my sister took me for a ride and told me I had brought all of this on myself.
We shipped Sabrina and her dog back to Germany, left my son’s cat on my sister’s second property where we thought we were going to be living, and took his dog and found an apartment in town. Talk about change? My son no longer had his friends or his abusive dad around. Sabrina was gone, and so were the chances of easy entry into the public school system. The cat who slept in his room was now roaming around outside on his own, miles from our apartment. And Derek was upset with himself that he allowed my brother and brother-in-law to speak to me like they had. He felt he should have stood up for his mother. And he withdrew into himself. He also decided that he wanted to continue home schooling, and knowing how devastating change was to him, I agreed.
I worked in retail for a while, and my son did his schoolwork with my parents keeping a watchful eye when I was working. Later, I worked as church secretary and was able to take my son with me to work each day. Good thing. My parents moved away, back to Florida retirement. That was another change for my son to handle. We often ate dinner with my Mom and Dad and my sister and her family. Without Mom to cook dinner for us all, that was no longer a regular occurrence.
Derek really got to know the pastor at our church and the youth director, by being at the church each day. The youth director was a woman almost my age, so she was like another mom to him. Besides, her son became my son’s best friend.
My teen also saw what goes on inside the church on a regular basis, and that became one more reason why Derek doesn’t like organized religion. The way adult members treated the pastor was surprising to both of us, especially in the South where “yes ma’am’s and no sirs” are spewed from the mouths of even babes. How confusing it was that members could be respectful of a stranger on a street corner, but not of the pastor and his family. Or the youth director and her family. Or the church secretary and son. They saw the church staff as hired help, people they could boss around because they paid our salaries. That we each felt called by God to serve Him, and that these were ministries to us, even my church secretary job, truly eluded them. Derek, in that teen spiritual confusion that many suffer through, could not separate the idea of church membership, religion, and a real relationship with Christ. In his mind, the people who were disrespectful to the church staff could not be Christians. And if they were, he didn’t want to be a part of their “club.”
The church members were not respectful of the church building either, God’s house. When leaks occurred in the roof, they put buckets in the attic to catch the drips. That was confusing to my teen too. Didn’t God’s house deserve the best treatment, the best maintenance?
There was a three month period when my son was about 16 that was probably as bad a time as when we left Florida. He contracted mononucleosis, then went into a deep depression when the pastor was asked to leave and the youth director sought a new job. Fawn, the youth director, found a job in Florida, so that mean Derek lost both his youth director/confidant, but his best friend as well. He lost his pastor/confidant at the same time.
Then, not long after that, my sister announced that she and her family would be moving to Michigan. The support system we had in place – family and church confidants – disappeared within a very short time. And Derek was depressed.
It came to light at about the same time that Derek had been smoking, and when we visited our family doctor for a follow-up visit about Derek’s mono and depression, we asked about a way to help him stop. The doctor prescribed a medication often used both for mild depression and for smoking cessation. Soon Derek had horrible anger bouts, and it wasn’t until I did an Internet search that I discovered why. That particular medication is not recommended for teens because somehow their increased hormone levels react to the drug causing increased anger. Great.
Derek visited psychologists, but none could put their finger on his problem. Like many professionals in his earlier life, they thought this mom was overreacting. They thought I just had a bright kid on my hands, going through “normal” teen hormonal problems. They didn’t live with my son each day. They didn’t see the pain he experienced at just doing everyday normal activities. They didn’t see how afraid he was of things that most of us just ignore.
My son did manage to graduate from high school, mostly because we could work our home schooling schedule around his awake times. Depression causes people to want to sleep, and sleep he did. But after graduating, Derek had no desire to go forward with his life. He hadn’t learned to drive yet. He had no desire to learn, and I wasn’t about to push him into that if he wasn’t ready. At one time, he’d had a job at the church, opening and closing the church on Sunday mornings and Wednesday evenings. But when he contracted mononucleosis, he resigned. After graduating, he made no effort to try to find a job, nor was he interested in attending college. What a waste. He’s such a smart kid.
Months dragged by, and then suddenly I read an article written by the mother of a child diagnosed with Asperger’s Syndrome. I read and re-read that article, and the tears ran down my cheeks. She was describing my child!
I searched the Internet, looking for Asperger’s sites and found dozens of them. I visited each one, even discovering one with an e-book by a 23-year-old man who had Asperger’s. His book was a blueprint for others suffering this condition about how to look for work, how to date, how to try to function “normally” in this world.
When I talked with my son about my discovery, he was skeptical at first. Even so, I could see the relief on his face as we spoke of Asperger’s Syndrome. Finally, there was a label for his strange behavior. Finally, there were others who understood the odd feelings he had.
We’ve filed for disability for my son, who is now 19 years old. Yes, he can learn to function normally in this world with Asperger’s. But having found the reason for his behavior at this late stage means that he’s missed out on treatments and missed opportunities to overcome. Had he learned to adapt and accept and understand his condition, that might have made it possible for him to be in college by now or at least be working at a job and learning to become an independent person. Starting the process of asking for disability means that he’ll be professionally evaluated, at no cost to us. And for a mom with no income right now, that’s important.
Note on October 20, 2004. We never finished the process of filing for disability for my son. We were living in Texas, and had to first have Texas Rehab diagnose his problem, before Social Security would get involved. Even knowing that my son's problems were social ones, the Texas Rehab people wouldn't make exceptions to their normal procedures. That meant having him sit in a room full of people - probably about 20-25 - as he took some tests. After completing the test, he would have gotten a private interview with a psychologist. But the thought of sitting in a room of people who also possibly had some kind of mental disorders was too frightening to my son. He couldn't manage it, and there was no convincing the Texas Rehab people that they should alter their methods of testing.
Sadly, I also was in yet another abusive relationship, and ended up fleeing Texas. Right now, I live with my parents and near my sisters in Michigan. My son has been living with his girlfriend and her mother in Tennessee. I wonder how long they will be understanding of my son's inability to get a job or go to school.
“Autism, the third leading childhood disorder in the United States, is a developmental disability that appears during the first three years of life. Although some children are born with autism, the vast majority experience a normal period of development followed by regression. Autism appears in many degrees, and although treatments and research studies positively continue, we are not closer to determining the cause of this disorder. Not long ago, autism was assumed to be uncommon, affecting as few as one in every 10,000 people. The latest studies, however, suggest that as many as one in 150 kids age 10 and younger may be affected by autism or a related disorder such as Asperger Syndrome, totaling nearly 300,000 children in America. If you include adults, more than a million people in the U.S. have an autistic disorder. It occurs in every socioeconomic class and in every state.” http://www.bssnp.com/autism.asp
“Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting".
“By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naiveté, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context. “
“Symptoms of Asperger’s include: impaired ability to utilize social cues such as body language, irony, or other “subtext” of communication; restricted eye contact and socialization; limited range of encyclopedic interests; perseverative, odd behaviors; didactic, verbose, monotone, droning voice; “concrete” thinking; over-sensitivity to certain stimuli; and unusual movements.”
Official DSM-IV criteria are similar to that for Autistic Disorder except do not include the “communication” problem areas: in other words, autistic people who talk well. [Many experts would argue that although verbal speech is preserved in Asperger’s, other communication problems certainly exist.]
(A) Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people(e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity.
(B) Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, non-functional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
(C) The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
(D) There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
(E) There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
(F) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
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